Archive | Autism RSS feed for this section

In search of monsters

By on September 5, 2014 in Autism

So the autism community is up in arms once again, divided down the middle and taking shots at one another. Kellie Stapleton faced a judge one year to the day that she tried to kill herself and her daughter Issy and plead “not guilty” to first-degree child abuse.

The earthquake was felt through out the entire autism community.

Finding Monsters

Like a Disney movie, when a tragedy falls upon the land, your first instinct is to identify the monster. Who is the evil villain this time?

Many people point to the obvious, Kelli Stapleton. The one who tried to take 2 lives, one that was not hers to decide to take. People petitioned for the maximum penalties, some petitioned to have it declared a “hate crime” in order to increase those maximum penalties.  Most people just voiced their opinions on social media.

Meanwhile others pointed to yet another monster, the causes leading up to Stapleton’s actions. Lack of services, lack of support, lack of aide, lack of funding… all the ways in which the systems failed Stapleton and pushed her to commit such terrible acts.

I think it’s fair to say that Ms. Stapelton definitely was a monster. Was she a monster before that day? Is she still a monster after? I don’t know. Was she a monster in that moment? Yes, yes she was. Or I should say, I believe she was. I don’t doubt that she may even agree with that.

Is it fair to say that all those systems that were supposed to help but didn’t are also monsters? Well, they didn’t commit any crimes and, in fact, I’m sure they did their best with what they had. But still, there can be monsters buried in good intentions. A good person refusing to do a good thing is it’s own very special kind of monster.

But there is more to consider than that. There are more monsters in the closet.

The abuse – Being beaten is traumatic. Whether it’s from a stranger, a loved one, intention, unintentional… there is no good way to hurt so bad that you end up in the hospital. This takes a toll on you. Does this make Issy (her daughter) the monster? No, clearly not. She had no self control. But the abuse… the action itself… the constant pain and fear and stress… that is a monster that many people can not live with.

Those who refuse to address the lack of services – These people are so deeply ingrained in the train of thought that Ms. Stapleton is the monster that they refuse to even consider any other monsters. That there was something clearly wrong with her it didn’t matter if she had received services or wasn’t abused or had a much simpler life.

Those who refuse to hold Stapleton accountable – I have not yet met a person that condones what she did but I have met a great many who think that the courts should go easy on her. In fact, that was the basis of her plea was that she had basically been abused and let down and stressed so bad that she was clinically insane when she committed those terrible acts. Many people agree with this and in so doing, feel that her punishment should not be as severe as it would be otherwise.

Not the right question

As The Doctor would say, you’re not asking the right question. The monster isn’t what is important here. Being able to point and say “there’s your monster!!!” changes absolutely nothing.

No, the real question is, how do we prevent this from happening again? ever!

Minority Report – Let’s say we could analyze people’s lives and maybe even be psychic for a day, would it be fair to identify people that have the ability to do such a thing? To find the monsters before they can be monsters? Even if it was fair, could we? Is there such a method that can recognize what a person will do after having a complete mental breakdown? Is there some method to identify the likely ways in which people will handle going from sane to insane in an instant due to PTSD?  I bet even if psychics were real, even they wouldn’t be able to know that.

Precedent – To be honest, I am kind of just making this one up as I see absolutely no other reason to call her a monster, label what she did a hate crime and then lock her away forever. I just don’t see the point of this except to maybe set a precedent such that if anyone else does this, they’d get the same treatment. While this sort of approach might stop a sane, understanding and logically thinking individual, I don’t see it having much of an impact on someone that snaps so completely that they try to kill their own child out of love. I mean, if she had known that the last mom that tried this was locked away forever, would it really have stopped her from trying?

Support – This seems the most logical and while I say “simple”, I know that it truly is anything but. Funding must increase, accommodations must be made. A person can not continue to take the beatings and the disappointments and the rejections for years and years and years all without ever getting any help from the people that keep saying “maybe next time.”

Monster Prevention

I am not professionally capable of determining whether or not Ms. Stapleton is or is not a monster or was or wasn’t a monster. I’m not professionally capable of fixing the insufficient funding nor service/support system deficiencies around the world. I am also not professionally capable of even guessing much less making any attempts to dictate how the law is going to proceed with all of this.

I feel that it’s very important to make you aware of this fact but even more so, myself. And those of you who make statements in social media or in comments or in blogs as if you were professionally capable of doing these things really should take a moment to make yourself aware of these facts as well. You’re not.

What I do know, however, is that whether anyone is ever convinced that they’re looking for monsters in the right places or the wrong places, the real questions we need to be focusing on, the real place we need to start looking for answers is… monster prevention.

How do we stop this from happening? How do we recognize the signs that this could happen? How do we stop it if it is in the process of happening? How do we not only save lives but make it so that those lives never need saving?

These are the questions that need answering. These are far more important things to know than who is or isn’t a monster.

I will leave you with one final thought… to anyone who doesn’t want to discuss these questions or find these answers, anyone that silences or censors others, anyone who wants revenge rather than justice, anyone that wants satisfaction rather than redemption, anyone that is attempting to shut down others who actively seek out ways to stop these tragedies from happening in the future… mirrors are a good place to find monsters.

Monsters in your head

Comments { 1 }

This is the scariest part about the CDC Whistleblower story by far

By on August 28, 2014 in Autism
CDC

CDC

As I watched the news unfold on August 22, 2014 about a CDC “whistle blower” coming forth to speak out about the CDC concealing results from the general public about any potential links between autism and the MMR vaccine, I couldn’t help but notice some very disturbing trends.

  • Panic – This is pretty normal. Having been in the autism community for a few years now, I see this every single time anyone says the “V” word. But this time it was on an unprecedented scale the likes of which haven’t been seen since 1998.
  • Confusion – People throw their hands in the air proclaiming all that they know was wrong and they no longer know what to believe. Who to believe? What to do?
  • Paranoia – “The CDC is intentionally harming our children” is just one of the statements I’ve seen. Many of the others that I’ve seen are similar.
  • Anger – What is the response for people who believe it? Anger. What is the response for people who don’t? Anger. And so the fighting begins.

All this aside, people took to Twitter (other social media sites as well but the worst I saw was on Twitter) and began a long and relentless stream of #CDCWhistleblower tweets. Days later, it was still picking up steam as celebrities such as Rob Schneider and Donald Trump got in on it.


What scared me most though, above all else, was watching all of these people demand that CNN and other media agencies answer immediately. That the very day that this came out, the very day that anyone became aware of it, people were outraged that the mainstream media was “ignoring” this story.

This defines the autism-vaccine movement in my eyes. This is why and very much how it’s gotten to this point.

People, in their fear and their panic and their confusion have decided that waiting for a proper investigation, fact checking, source checking or anything that looked like thinking about it… was a waste of time. People immediately came to the conclusion that the mainstream media was covering this up because it didn’t show up on the 6 o’clock news that evening.

And this really sums up the anti-vaccine in a nutshell. The raw emotion that bubbles up through the mixture of fear, hate, panic and confusion has no time for facts or verification. People want immediate answers and they don’t care where those answers come from.

Now, I know, you may be reading that and are getting upset but honestly, truthfully consider this. If you really do want the truth, please just consider these few points:

  • The video comes from Andrew Wakefield, the guy who’s whole career was destroyed due to his false claims. Of course he wants to salvage that.
  • The “study” is based on a smaller, hand picked bunch of numbers from a larger study that already had it’s own margin of error.

To break down the study, let’s consider this… if you take all the people in the US and figure out how many people are born with Albinism (albino), it’s about 1 in 17,000. But if I wanted to, I could figure out whether it’s more common in men or women and then pick that one. More common in one state than the rest and pick that one. More common in people of a certain age group and pick that one. More common when parents drink coffee or not and pick that one. More common when the baby is born on a certain day of the week and pick that one.

What I’m getting at is, to a researcher, given enough time and effort, you can take any study and work the numbers until eventually you have 1 in 6 people being albino.

If the people that pay you to work those numbers happen to have an invested interest in making sure that those numbers say that??? Well, then you take that a whole other level higher.

And for the record, the doctor that did the study, Dr. Hooker, was just such a doctor that had an invested interest in proving vaccines caused autism. More so, he was funded by Focus Autism, who by the way, have a huge investment in making those numbers tell their own story.

Once they did, who told that story? Andrew Wakefield. The guy with his own vaccine patents.

But back to my original point, no one wanted to hear any of this. No one wanted it checked, or verified or questioned or investigated or… well, anything. They wanted none of that because that took time and they wanted answers that day. That, to me, is scary as hell. That’s a huge disappointment to me. I really thought that people would want better. I really thought that people would want real answers, not fast “what I want to hear” answers.

If you aren’t one of those “just tell me what I want to be told” types of people and actually do want the real truth, please please please stop and consider the sources, the facts, the time it takes to be absolutely certain and please, don’t just believe the first thing you hear. If it’s the first thing you hear, chances are no one took the time to check to see if it’s true. Please read the below links as they take the time to explain all that I’ve said here and more in very in depth detail and accuracy.

If you truly want the truth, you owe it to yourself to give it the time it deserves.

As do your children, who by the way, hold their very lives in your hands and are depending on you to understand this, not just get the quickest answer.

For more info:

Time –Whistleblower Claims CDC Covered Up Data Showing Vaccine-Autism Link

CNN –Journal questions validity of autism and vaccine study

Left Brain/Right Brain – Autism, Atlanta, MMR: serious questions and also how Brian Hooker and Andrew Wakefield are causing damage to the autism communities

IFLScience – No, The CDC Is Not Covering Up Evidence That Vaccines Cause Autism

Whistle Blower’s Statement – Statement of William W. Thompson

Comments { 13 }

The reason most people can’t become activists

By on August 21, 2014 in Autism

When I started my blog over 4  years ago, I was encouraged and even praised for saying the things that people could relate and agree with. It was encouraging and spurred me on to post more.  But it wasn’t long before little dark spots began to seep through the light. More and more people would hate me, for no apparent reason. They’d argue with me about one topic while I was talking about a whole other topic and be totally confused as to how there ever came to be an argument.

Over the last year especially, I feel like a boxer in the ring, never getting a timeout in between rounds, having to keep my feet moving the whole time all the time keeping my defenses up at the same time.

The more people that become aware of my activism and more so, of me, the more people there is on the opposite side of the boxing ring that are taking swings at me.

There are people that are just looking for fights. They aren’t bad people, they’re just angry. It will not matter at all what you try to discuss, they will pick a fight with you. As I said, sometimes it leads to them arguing about your topic by introducing a whole other topic that has no business being involved in the discussion at all except to serve the purpose of being a reason to fight.

Worst of all though are the bullies. The people that are jealous of what you do, what you’ve become and who you are. If you find yourself on the television news because you are making such a positive difference in people’s lives, you can be sure that you will inherit a whole new group of low life bullies that seek out your Facebook page, your email address, phone number and more. And why? Because you are doing something nice? Because you’re helping people?

I kind of look at activism in much the same way as gambling. You take a big risk putting yourself out there and in the beginning, you get a few small wins. Those wins make you think that you really have a shot at doing well. So you start putting in more time and taking bigger risks. Eventually though, you start wondering if all those wins are really worth it when you start to realize that the deeper you get, the better the chances are that you’ll lose it all.

You can see this happen with celebrities. No matter how well loved or celebrated they may be, by the entire world it seems, they will still always have a very vocal group of people that want nothing more than to cut that celebrity down and make them feel terrible. There’s no reason for it, or at least I should say, no logical reason that I would ever see. I am sure those people have their reasons but I make no effort to understand nor share in those reasons.

When I started my Minecraft server to help children with autism and their families, I became a huge target of this. The more people that knew my name, the more I would receive emails, phone calls, friend requests and more… and not to be my friend neither. It was to send me threats or terrible messages.

I don’t often speak or write about it but the truth is, the more that I get recognized, the more I get targeted by bad people.

Over the last year I’ve heard from many children with autism saying that they wish to do the same as I have done, or even more. And while I admire that in them and I applaud them for wanting to do good in this world, a part of me fears for them. I know what is awaiting them if they were to try do something grand, something wonderful. What’s waiting for them isn’t so wonderful.

I sit and watch as someone shares on Facebook how they do something wonderful in their community to make sure that people that are going hungry will get food donations… I watch as praise comes in for a while until eventually the conversation spirals out of control and turns into arguments and turmoil and eventually this person doing this great thing is left wondering what they just got themselves into.

It’s important to remind yourself, if you blog, run a program, do charity work or any other sort of activism, it’s worth it.

The people you help are a very real tangible thing. That’s progress, that’s a change in the world. That’s something.

People that try to upset you, anger you, fight with you or just be a terrible human being in general, that’s nothing. That’s not real. That’s a tiny little thing in the world coming from a tiny little person.

Over time, with enough of them doing it long enough, it can become overwhelming and we question what we’re doing, why we’re doing it and if we can do it any longer but the truth is… we really can.

That one terrible person may shout louder than the 100 great people that are supporting you but it’s still just one person out of a hundred. You must never lose sight of the big picture and that big picture is bigger than you, it’s bigger than the terrible people in the world… it is the world.

Keep your head up, keep walking passed the haters.

And if you can’t, help someone that can. Stay behind the scenes, there’s no shame in that.

So long as progress is made, so long as a difference is being made.

Never let one terrible person stop you from all the good you can do.

Comments { 7 }

A wish for his autistic brother

By on August 16, 2014 in Autism
Tyler

Tyler

I would like to introduce you to Tyler. He is currently 6 years old and is as smart as he is adorable. He has an amazing sense of humour and is very clever. He’s also very clumsy, often spilling stuff but feels terrible about it and is quick to clean up and make it right with a warm hug.

Recently, a woman asked little Tyler what he would ask for if he had 3 wishes.

Now, you would expect that little boys would want all the candy in the world, or all the toys they could dream of or unlimited video game time. That’s what we want for children to wish for, right? That’s the kind of stuff that should be on the mind of a little boy. That’s the kind of thing that we like to think that all kids have to worry about… how to get more of what they like.

So what was Tyler’s first wish?

Tyler wished that his brother Cameron did not have autism.

This is the reality for siblings of children with autism. Children want their family members to be the best that they can be. Big brothers, moms, dads… they are the real superheros. And to a 6 year old little boy, they shouldn’t have anything wrong with them. And to a 6 year old little boy, who loves his brother so very much… Cameron has something wrong with him. Autism.

In the autism community, if an adult said that, many would be outraged. There’s nothing wrong with Cameron and to want his autism to be gone would be to want Cameron to no longer be Cameron.

For a 6 year old little boy though, who loses time with his brother because he’s off stimming or because they fight because Cameron obsesses too much or lacks the proper communication skills, or because he can feel his own 6 year old intellect slowly surpassing his big brother’s 9 year old intellect… his number one wish in all the world, more than games or candy, is that Cameron didn’t have autism.

What did you wish for when you were 6 years old? Was it for toys? Candy?

I don’t think he realizes it yet but there’s some small part of him that is becoming more and more aware… his big brother is going to depend on him.

As time goes on, I know Tyler will continue to love him and accept him and be happy that his big brother is just the way he is, but I also know that there will always be a 6 year old little boy deep inside him who’s only wish is that his big brother didn’t have autism.

What were his other wishes?

That I would cook dinner faster and that the wall in his bedroom had nothing on it. Phew, still a 6 year old after all 🙂

Comments { 3 }

I refuse to be your saint

By on July 25, 2014 in Autism

When I started writing about autism, I came under heavy criticism with each word I wrote from everyone and everywhere. I had to make sure that each word was the right word, each opinion was as least offensive as possible, that each fact was verifiable and that anything I could say about me or my situation was in no way inferred to mean that it’s how it is for anyone else.

Since starting my Minecraft server for children with autism (Autcraft), all that changed. Now, I can’t just preface the things I say, I can’t just claim things as my own thoughts, I can’t just choose the right words… now I have to aspire to sainthood because apparently anything less will result in the harshest of criticisms.

I thought that by starting a simple little Minecraft server for autistic children, people would simply be appreciative and let their children play and I could just run it while continuing on with my life like usual but that has not been the case. Now my every word, thought, decision and action are put under a microscope and analyzed and judged.

It sounds extreme but trust me, those that work with me on the server have seen it. I can no longer just be me. Sarcasm? Nope, someone will take it wrong. Humour? Nope, someone won’t laugh.  Opinions? Definitely not anymore.

Here’s the thing, if I say or do one wrong thing, no matter how innocent, this wonderful world of the Internet has the ability to take that, twist it, mold it and grow it into something absolutely incredible and have people wishing for your death. Again, sounds extreme, but it’s true.

Normally, in the past, this wouldn’t have concerned me because if people hate me for something trivial or misunderstood or what ever, I wouldn’t care. I don’t know them, I don’t see it when I walk away from the computer, it doesn’t affect me. For the years of writing my blog, this approach has served me well.

Autcraft is entirely different though. Autcraft is a safe haven for children with autism and it is very much needed by many of these children. Their parents too. They love the place. They thrive there.

So now I have more to protect than just my own reputation. Now, I have a community to protect. I have a support system to protect. And every single time I say anything anywhere now… that community is put at risk.

I don’t think many could understand the extreme pressure that puts on me to be… well, perfect, somehow. If I say one insignificantly tiny thing wrong and someone takes that to use against me, it’s no longer me that comes under attack but Autcraft itself.

The children start to doubt their safety. Parents stop letting their children play there. The children start to panic and feel scared.

I’m an autistic adult and I have 2 children, one with autism. I don’t smoke, drink, do drugs… I don’t even swear. I started a Minecraft server for kids with autism simply because I want to help. And every day.. every single day… I have to be a saint… I have to do better than the best… because one wrong word and it’s those children that suffer. They shouldn’t have to be scared.

Well, I’m here to tell you that it’s just not possible. I am a very nice guy, I do my best to do no wrong, but I just can’t be your saint. I just can’t be as perfect as it seems the world wants me to be.

All that I ask is that people stop forgetting that I’m a human being and start recognizing that I’m just a guy who wanted to do something nice. The server is doing great, the children are happy. Please don’t hold them responsible for any issues you have with me not being perfect.

I refuse to be your saint.

I just can’t take that sort of pressure.

I am not a saint

Nelson Mandela

Comments { 3 }